Click on an item below or scroll down the page

• What is MS?
• What is Trigeminal Neuralgia?
• Genes and MS - What's it all about?

1. Mercury Amalgam Fillings (Posted: 25/06/2008)
2. Fingolimod News (Posted: 10/06/2008)
3. LDN Update (Posted: 10/06/2008)
4. Bone Marrow Transplant (Cloud with Silver Lining" (Posted: 10/06/2008)
5. Coffee, Mice & MS (Posted: 08/05/2008)
6. Noni Juice (Posted: 06/05/2008)
7. Disappointing result from Sativex Trial (Posted: 06/05/2008)
8. Wheelcahir User Refused Pub Entry Wins Compensation (Posted: 15/04/2008)
9. Further Strong Evidence of a Link between MS & Chickenpox/Shingles (Posted: 13/03/2008)
10. Pregnacy, Delivery & Birth Outcome at Different Stages of MS (Posted: 01/03/2008)
11. Tysabri Update (Posted: 01/03/2008)
12. US Electronic Aid to Rectify 'Drop Foot' (Posted: 26/02/2008)
13. Benefits of Exercise Programme on MS Quality of Life - an Irish study (Posted: 23/02/2008)
14. Tysabri Approval in NI From April 2008 (Posted: 15/02/2008)
15. Married Couple Both Diagnosed with MS (Posted: 07/02/2008)

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1. Fined for Speeding in a Wheelchair (Posted: 15/12/2007)
2. From Inkjet Technology to Painless Injection via an Irish Company??? (Posted: 14/12/2007)
3. Riveting Video Interviews with Young Persons Diagnosed with MS & their Parents (Posted: 07/12/2007)
4. Marathon Running with MS at Age 59 (Posted: 4/12/2007)
5. Evidence of Epstein-Barr Virus in Multiple Sclerosis Brain Tissues (Posted: 4/12/2007)
6. Important change to disability act- MS now covered from diagnosis (Posted: 22/11/2007)
7. Interesting PatientsLikeME site collects details from large number of persons with MS (Posted: 13/09/2007)
8. Governance? Workshop (Posted: 26/07/2007)
9. It could only happen in real life - it's too surreal for fiction! (Posted: 19/06/2007)
10. Testosterone May Benefit Men With MS. (Posted: 15/05/2007)
11. Foyle Branch Meets Governance Review Group. (Posted: 07/05/2007)
12. Unanimous Branch Support for Mediation at Disputed Meeting (Posted: 01/05/2007) Recent
13. MS Gender Gap Doubles over Last 60 Years in US (Posted: 01/05/2007) Recent
14. NI Members invited to Extraordinary General Meeting on 28 April (Posted:03/04/2007) Recent
15. Prospect of UK Finance for NI in Chairman's latest letter (Posted:03/04/2007) Updated/Corrected/(14/04/2007)
16. Russian Pianist with MS performs around the world to raise funds for MS groups (Posted:03/04/2007) Recent
17. Strong Support For NI Council at Meeting (Posted:01/03/2007)
18. NI Council Suspended (Posted 08/02/2007)
19. Worms and MS (Posted: 26/01/2007)
20. PC Receives Payment for Delayed Diagnosis of MS (Posted: 08/01/2007)

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1. An Awesome Wheelchair (Posted: 30/12/2006)
2. News of LDN in MS Pilot Trial (Posted: 29/12/2006)
3. More Evidence on Vitamin D Levels and MS Risk (posted: 20/12/2006)
4. Evaluation of a MS Specialist Nurse Programme (posted: 10/11/2006)
5. MS and Your Feelings by Allison Shaddy (posted: 08/11/2006) Advance notice of forthcoming book
6. Research Reports from Jordanstown (Posted: 01/11/2006)
7. Form of Vitamin B3 reduces disability in mouse model of MS(Posted: 21/09/2006)
8. Tetanus Vaccination Reduced The Risk Of MS (Posted: 01/08/2006)
9. Children Of Men With MS Twice As Likely To Develop MS (Posted: 01/08/2006)
10. Tysabri given new approval by FDA (Posted: 06/06/2006)
11. JK Rowling Makes Large Contribution to MS Research Centre (Posted: 20/04/2009)
12. Epstein-Barr Virus And Multiple Sclerosis (Posted: 19/04/2006)
13. Sativex Spray Update Disappointing (Posted: 30/03/2006)
14. Tysabri looks like getting a second chance in US (Posted: 15/03/2006)
15. Bee Sting Study Found No Improvement in MS (Posted: 20/02/2006)
16. Scientists Suggest Exposure to Aluminium Linked to MS (Posted: 17/02/2006) Could it be this simple?
17. New York Central Station Exhibition of Photos of Persons with MS (Posted: 16/02/2006) Website worth visiting
18. Experiences of Children and Adolescents Living with Multiple Sclerosis (Posted: 08/02/2006) Interesting study
19. MS waiting lists to disappear in two years in NI promises Minister (Posted:07/02/2006)Good news for NI
20. Shake, Rattle & Roll Your Way To Better Mobility & Balance? (posted: 19/01/2006) Recent
21. Effects of Beta-interferon on Adolescents & Children (posted: 15/01/2006) Encouraging - Recent

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1. Cannabis spray implicated in death of diabetic (posted: 17/12/2005)
2. Smoking cannabis & schizophrenia - a disturbing link (Posted: 15/12/2005)
3. Outcome of follow up study of effects of cannabis extracts on MS (posted: 14/12/2005)
4. Important breakthrough claimed in nerve signal transmission mechanism (posted:08/12/2005)
5. Stem Cell Treatment Claim (posted: 01/12/2005)
6. UK persons with MS to get some access to cannabis spray (Sativex)(posted:15/11/2005)
7. Trust set up to fund LDN Research(posted:15/11/2005)
8. Would cooling the body help in exercising? (posted:08/11/2005)
9. When to disclose a diagnosis of MS? (posted 08/11/2005)
10. Awareness & Fundraising Programme for Schools Launched in NI (posted: 23/09/2005)
11. Low-Dose Naltrexone (LDN) & MS (posted: 31/08/2005)
12. Pregnancy Outcomes During Treatment With Beta Interferon In Women With MS (posted: 16/08/2005)
13. Is this Better News for Tysabri?> (posted:16/08/2005)
14. Smoking & Progression of MS (posted:31/05/2005)
15. Spouses Living with MS (posted: 18/05/2005) Carers Awareness Week-13-19 June
16. Single Gene linking MS, Rheumatism and Heart Disease discovered (posted: 20/04/2005) Important discovery
17. Conditional Canadian Approval for Cannabis Spray (posted: 19/04/2005)
18. Goat Serum (Aimspro) Trial Halted (posted: 07/04/2005)Disappointing news
19. Tysabri (Antegren)Shock Withdrawal Only Weeks After Positive Results From Trial And Just Months After FDA Approval (posted: 28/02/2005) Shock Withdrawal
20. Tysabri (Antegren) trial confirms earlier positive results (posted 18/02/2005)
21. What's this about Goat Serum? (posted: 16/02/2005)
22. Why do more Women than Men get MS? (posted: 29/01/2005)
23. Dog Support for Woman with MS (posted: 18/01/2005)
24. Hormone Influences in MS (posted: 17/01/2005)

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1. Honey Bee, Friend or Foe? (bee venom)" (posted: 30/12/2004)
2. Effective Stem Cell Treatment for Incontinence (posted: 30/11/2004)
3. Antegren, renamed Tysabri, gets FDA approval for MS (posted:25/11/2004)
4. Important discovery of Key to Immune System (posted:16/11/2004)
5. Latest on Antegren (natalizumab) Trials (posted:10/11/2004)
6. Should persons with benign MS consider delaying treatment? (posted:28/09/2004)
7. Yoga & Exercise relieve Fatigue in MS (posted:22/06/2004)
8. Patterns of Cannabis Use among Persons with MS (posted:22/06/2004)
9. Small study suggests statins may be effective in reducing MS (posted:25/05/2004)
10. Persons with MS report favourable quality of life> (posted: 25/05/2004)
11. Doubt cast on autoimmune mechanism in MS (posted:05/03/2004)
12. Encouraging news for recently diagnosed (posted: 07/02/2004)
13. Skin cancer in persons with MS (posted:31/01/2004)
14. Vitamin D could help to prevent MS (posted: 14/01/2004)

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1. Mixed outcome to UK cannabis trial (posted: 07/11/2003)
2. Smoking increases risk of MS (posted: 07/11/2003)
3. Bone marrow transplant study - update (posted: 16/10/2003)
4. Potential donors invited to register with UK MS Tissue Bank (posted: 16/10/2003)
5. What ever became of Cari Loader's "Treatment"? (posted: 16/09/2003)
6. Human Tests for Promising Vaccine (posted: 25/09/2003)
7. Childhood exposure to sun may help to prevent MS (posted: 25/09/2003)
8. Reflexology relieves symptoms of MS (posted: 25/09/2003)
9. Evidence that Cooling can improve symptoms of MS (posted: 02/07/2003)

Items posted before 2003

1. The needs & experiences of caregivers of local persons with MS
2. Is there a need for palliative care for persons with severe MS?
3. Childhood MS
4. Lung Cancer Threat from Cannabis Smoking
5. Controversial claim that MS could be a sexually transmitted infection
6. J K Rowlings donates £500,000 to MS research in Scotland
7. Claim that new blood test may be effective in diagnosis of MS
8. More on UK Cannabis Trials
9. Alternative Therapies
10. Could curry powder help in MS?
11. New stem cell transplant treatment shows promise
12. Trials to start on promising new protein based treatment in Australia
13. Claim that Provigil is an effective & safe treatment for MS fatigue symptoms
14. MS patients in GB to get access to beta interferon
15. Remyelination Research
16. Health Insurance Woe
17. Canada legalises the medical use of cannabis
18. The Science Shop, (Magee Campus, University of Ulster)
19. Queen's University Research Project
20. University of Ulster Research Project
21. Chronic Pain

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• What is MS?

  Northern Ireland has one of the highest rates of MS in the world with about one in five hundred people affected. Up to three quarters remain active and can cope with everyday needs. A minority is very severely affected from an early stage.

  MS is a disease that damages nerve coverings within the central nervous system. The brain and the central nervous system control all our actions. The central nervous system sends electrical signals along nerves to various parts of the body. Nerve fibres are insulated by a fatty substance called myelin, which aids the flow of messages. MS causes unpredictable spot damage to myelin which breaks down and is replaced by scar tissue. This can interfere with the flow of messages with the result that they may be blocked, weakened or misdirected to the wrong place. Since the messages control all our movements, the effects of MS are very varied. Some have blurred or double vision. Many experience severe fatigue. Some have speech difficulties. Some may have spasms, numbness or partial paralysis of part of the body. Others experience problems with bladder or bowel control or balance. Symptoms can vary from mild to severe. Often people experience long periods of remission when symptoms diminish or even disappear completely.

  The cause of MS is not known although research suggests that there may be at least two factors involved - a virus and an immune system effect. The most widely held view is that a virus or more than one virus may trigger a reaction in a person's own defence or immune system which causes it to attack its own myelin as though it was a virus. This is known as an auto-immune reaction and it is believed that people affected by MS may have a genetic susceptibility that renders them vulnerable. Research has attempted to identify viruses and genes that may be involved, but results to date, although showing promising progress, have not yet succeeded. MS is not hereditary but the genetic disposition can be with the result that the risk of contracting the disease among the descendants of a person with MS is greater than the risk among the general population.

  There is no cure or preventative treatment to date for MS. However, with good care, it can be managed and many of the symptoms can be alleviated with drugs. A good diet and adequate rest are usually helpful. Physiotherapy and regular exercise can help to relieve muscle tightening and maintain muscle tone. Prompt treatment of any infection is very important. A positive attitude and a determination to maintain maximum mobility and activity appear to be important psychological factors in dealing with the symptoms. More detailed information can be accessed through the useful links page.

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• TRIGEMINAL NEURALGIA

  The trigeminal nerve (also called the fifth cranial nerve) is one of the main nerves of the face. There is one on each side. It comes through the skull from the brain, in front of the ear. It is called trigeminal as it splits into 3 main branches. Each branch divides into many smaller nerves. The nerves from the first branch go to the scalp, forehead and the area around the eye. The nerves from second branch go to the area around the cheek and upper teeth and those from the third branch go to the area around the jaw and lower teeth.

  TN involves sudden, severe, pain from one or more branches of the trigeminal nerve. The second and third branches are the most commonly affected resulting in pain around the cheek or jaw. It usually affects one side of the face and is considered to be about the most severe pain of any medical condition. It is sometimes described as like electric shocks stabbing the face. Each stab can last from a few seconds to a couple of minutes. Events such as eating, talking, brushing teeth, shaving, swallowing or a draught may trigger a pain.
  
  The cause is not known but there is a higher incidence among persons with MS than in the general population. It may be related to the formation of plaques on the trigeminal nerve. Tegretol (carbamazepine) , an anticonvulsant drug used to treat epilepsy is commonly used to treat TN because of its effect in quieting nerve impulses. Other anticonvulsant drugs such as Lamictal (lamotrigine), Neurontin (gabapentin), or Lioresal (baclofen) may also be used. Various surgical techniques may be considered if medication does not work.

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• Genes and MS - What's it all about?

  Recent discovery of a link between two genes and a genetic susceptibility for MS has attracted media attention. The discovery has been hailed as the first for over thirty years. Every discovery of this kind is to be welcomed. The recent discovery is particularly of interest because the two genes involved are outside the HLA group of genes that have been linked to MS for over thirty years.

  The recent studies suggest that variations in these newly linked genes increases the susceptibility to MS by less than one percent whereas variations in genes within the HLA group are believed to account for nearly 50% susceptibility.

  The HLA cluster of genes includes over 200 genes. The detail is very complex and it is believed a considerable number of these genes may play a part in MS. The following is a simplified account of the role of the HLA genes.

  The cells of the body carry protein markers that allow the immune system to identify them . Tissue not marked as belonging to the body is seen as foreign and is normally attacked by the immune system. Viruses and bacteria are identified in this way and a healthy immune system attacks them. The white blood cells are the main component of the immune system. Unless compatible with the body's own tissue, transplanted tissue will also be attacked. Only tissue from an identical twin is fully compatible and drugs are normally used to dampen down the immune system during transplant surgery. After a period, the immune system comes to 'recognise' the new tissue as the body's own.

  Variations in some of the HLA genes result in the immune system not recognising certain cells as the body's own cells and they are attacked. In the case of MS, the protective myelin covering round the nerve cells of the central nervous system are attacked and the resulting damage interferes with the messages between the brain and the muscles. .Similar mechanisms are involved in other auto-immune conditions.

  It is to be hoped that the increasing understanding of the human genetic make-up, generally known as the human genome, which contains about 25000 genes, will eventually lead to effective preventative measures against MS and other auto-immune diseases.

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Items posted 2008

1. Mercury Amalgam Fillings

   

   Mercury is a naturally occurring very heavy toxic metal that remains in the body for very long periods. It is used, for example, in mercury thermometers and fluorescent lights and can be present in fish from polluted water. There are many anecdotal claims of a link between MS and mercury fillings. Dental associations and amalgam manufacturers insist there is no clinical evidence of a link with MS or any illness although they do not dispute that mercury vapour is released during installation or removal of fillings and during chewing on fillings.

   The U.S. Food and Drug Administration (FDA) has issued new advice on mercury fillings following a recent court case in which they were criticised for out of date advice. The advice is very carefully drafted to comply with the decision in the court case but stops short of confirming any definite effect from mercury.

   The FDA advises that :-
   Dental amalgams contain mercury, which may have neurotoxic effects on the nervous systems of developing children and fetuses. When amalgam fillings are placed in teeth or removed from teeth, they release mercury vapor. Mercury vapor is also released during chewing.

   It goes on to say that it will examine evidence concerning whether release of mercury vapor can cause health problems, including neurological disorders, in children and fetuses and has invited comments up to 28 July.

   It does not, at present, recommend the removal of mercury fillings.

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2. Fingolimod News

   Fingolimod is an experimental drug for MS taken once daily as a tablet. Results of a phase 2 trial show tremendous promise. Over 70% of persons remained relapse free after 3 years and almost 90% were free of active brain lesions characteristic of MS. There always seems to be a downside and there is a concern that 7 persons from the original 281 were discovered to have developed skin malignancies. All were localized and were successfully removed.

   
   
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3. LDN Update

   Varied and impressive claims have been made by individuals and groups over recent years about the effectiveness of Low Dose Naltrexone (LDN) and MSFoyle Forum carries a small number of items posted by members. To date there is little clinical research to support the claims, partly because the large pharmaceutical companies that fund much of the MS research are not interested as LDN is a relatively cheap drug that does not promise large financial returns. Naltrexone at a relatively high dose is approved for treatment for heroin addiction but the claims in relation to MS involve very low doses. Most of the approved therapies for MS involve drugs that dampen down the immune system that is believed to be attacking the body's own myelin. LDN acts by enhancing the immune system. Researchers at Penn State College of Medicine in Hershey recently reported that LDN decreased symptoms of Crohn's disease and improved quality of life for some participants. They plan to proceed to a phase two trial. A clinical trial in Italy is looking at the effects of LDN on spasticity, pain and fatique among persons with primary progresseive MS. So far LDN is well tolerated and preliminary reports suggest significant benefits. A full report is expected to be published soon. Persons considering LDN are advised to discuss it with their medical advisers, particularly if currently on interferon as LDN acts in a directly opposite way to interferon.

   
   
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4. Bone Marrow Transplant News (Cloud with Silver Lining)

   

   Researchers at the University of Ottawa decided to try to understand the development of MS by destroying the bone marrow of persons with MS and then transplanting back some of their bone marrow stem cells. They expected the disease to replicate itself and they hoped to learn more about how it proceeds. Strictly speaking their experiment was a failure but the outcome was like a cloud with a silver lining for most of the participants. The disease did not reappear and has still not done so after 7 years. The procedure is extemely dangerous and unfortunately one participant died. The researchers are still trying to fully understand the outcome.

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5. Coffee, Mice & MS

   Mice with induced EAE(a kind of mouse MS) are used extensively in MS research where positive outcomes can later be trialled on humans.

   According to a Washington Post report, research on the effect of caffeine on EAE by a team from Cornell University School of Veterinary Medicine, in Ithaca, N.Y. was reported at the Experimental Biology 2008 meeting.

   Mice given the mouse equivalent of about 6 to 8 human cups of coffee a day were 75 percent less likely to develop EAE than those not given it.

   Before we start over-dosing on coffee , it must be remembered that EAE is not identical to MS and what has worked on mice in the past has often not worked on humans. Hopefully this preliminary work will be followed by research on humans .

   
   
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6. Noni Juice

   Noni juice is made from the fruit of a Polynesian plant called morinda citrifolia. Individual, anecdotal, claims have been made about it's effectiveness in dealing with MS but it has not been tested in clinical trials. The authors of a book intended as a reference book for health professionals, say that it has some immune stimulating effects but they warn that it may interfere with the effectiveness of existing MS treatments that modulate or suppress the immune sysytem. They also indicate that it contains relatively high levels of potassium and, in high doses, could cause serious kidney problems.

   As with LDN, the safest advice for anyone considering taking it is to consult their GP or neurologist, especially if they are on existing treatments.

   
   
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7. Disappointing Results From Sativex Trial

   Disappointing results were recently reported from a trial of the cannabis based drug, sativex, and the trial was discontinued. GW Pharmaceuticals, the company involved, said that the difference between the drug and a placebo was not significant. Paradoxically, the company claimed that the results do not detract from earlier claims made about the drug's effectiveness in providing relief from pain associated with MS. Sativex was approved in Canada in 2005 as a treatment for pain in multiple sclerosis patients and it is also available in Britain on special permit.

   
   
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8. Wheelchair User Refused Entry to Pub Wins Compensation

   According to a BBC news report, a wheelchair user who was refused entry to a bar in Lurgan was paid £3000 in an agreed settlement in a case supported by the Equality Commission.

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9. Further Strong Evidence of a Link between MS & Chickenpox/Shingles

   A number of studies have suggested a link between MS and the virus that causes chickenpox & shingles. Research at the National Institute of Neurology and Neurosurgery in Mexico into a link is reported in Annals of Neurology (Ann Neurol. 2008 Feb 27 [Epub ahead of print] ).

   The researchers used electron microscopy to check the cerebrospinal fluid from 15 MS patients during relapse, 19 MS patients during remission, and 28 control subjects. They found evidence of particles identical to the virus in the first few days after an acute relapse but not among those in remission or among the control subjects. There was a steady decline in the presence as the persons moved from relapse towards remission. They also used a different method to detect the presence of DNA from the virus with similar results.

   They concluded that this was very strong evidence of a link between the virus and MS.

   Comment: This very interesting and important research establishes only that a link exists between the two. It does not establish that the virus causes MS. It could equally be the case that the virus is latent and is re-activated by the MS. It should also be remembered that there is evidence that many factors may be involved in MS.

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10. Pregnacy, Delivery & Birth Outcome at Different Stages of MS

    The findings of a Norwegian study published in the Journal of Neurology in February (J Neurol. 2008 Feb 19) will be of particular interest to members who may be considering pregnancy.

    The study used the Norwegian MS Registry and the Medical Birth Registry of Norway to compare the effect of MS on births at three different stages of MS. They looked at births among mothers before the onset of MS, between onset and diagnosis and after diagnosis.

    They reported that they did not find any differences in the rate of birth complications and interventions between the three groups but they did record a significant lower mean birth weight among the third, (after diagnosis), group compared with that among the first(before the onset of MS) group.

    The study did not compare the groups with births among the general population.

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11. Tysabri Update

    The companies producing Tysabri and the FDA(US Licensing Body) have warned doctors not to prescribe tysabri to persons with jaundice or other liver disorders because of a case where serious liver problems appeared within six days of starting tysabri.

    As reported on this page, Tysabri Approval in NI From April 2008, two persons with previously benign moles developed melanoma shortly after starting tysabri. Their doctors advise that tysabri should not be prescribed for persons with a family history of melanoma or for those with certain moles.

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12. US Electronic Walking Aid to Rectify 'Drop Foot'

    According to a report on the ABC News website, a woman diagnosed with MS was having considerable trouble walking because of 'drop foot', a conditon all too familiar to many with MS. It is caused by interference with the signals from the brain to the muscles that lift the foot during walking.

    A company called WalkAide has developed a small, ipod sized, electronic gadget that is worn strapped to the leg just below the knee. It senses the movements of the leg and sends suitable signals to the appropriate muscles that assist the foot to lift properly.

    According to the report. without the WalkAide, the woman limped along with the help of a cane but using the device, she is able to climb stairs with no visible limp.

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13. Benefits of Exercise Programme on MS Quality of Life

    The report of a recent study carried out in Trinity College, Dublin, may be of interest to members, especially those who may become involved in the UU research.

    The researchers carried out a randomized controlled trial involving 30 persons from the Dublin area. 24 persons completed the three month trial, 12 in a control group and 12 in the exercise group. The exercises were held twice weekly in a hospital gym and the participants also exercised independently once each week. All 24 were monitored against a number of established scales at the end of the three months.

    The authors report a significant improvement in exercise capacity, fatigue and quality of life among the exercise group and this was maintained three months after the trial finished.

    The study is reported in the current issue of Clinical Rehabilitation (Clinical Rehabilitation, Vol. 22, No. 3, 206-214 (2008))

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14. Tysabri Approval in NI From April

    Health Minister, Michael McGimpsey, announced NI approval from next April for Tysabri during a visit to the MS Society Centre in Belfast. Tysabri has been shown to be a very effective therapy especially in some cases that do not respond to other treatments. Its use is restricted because of possible deadly side effects , particularly where combined with certain other medications. Nevertheless, its availability within NI is to be welcomed and provides neurologists with an important additional option.

    So many developments in relation to MS seem to be followed by some slippage backwards. This is certainly true of tysabri as anyone who has been following its development will know. Now, hot on the heels of the NI announcement, comes evidence of a possible link between tysabri and melanoma. A letter in the current edition of the New England Journal of Medicine (N Engl J Med. 2008;358:647-648) warns of two instances where previously benign moles developed into malignant melanoma soon after treatment with tysabri started. The authors recommend that tysabri should not be prescribed for persons with family histories of melanoma or for those with certain moles.

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15. Married Couple Both Diagnosed with MS

    According to a report on the DesMoinesRegister.com website, husband & wife, Kent & Linda Gaulter were both diagnosed with MS, 46 year old Kent in 2005 and Linda a year later. The chances of this happening are about 1 in 750,000. You can access the story at the DesMoinesRegister.com site.

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Items posted 2007

1. Fined for Speeding in a Wheelchair

   According to a report on the Ananova website a wheelchair user in Germany was fined £300 and had his wheelchair confiscated for travelling at 40mph on a high street. Apparently the 54 year old engineer had modified the engine so that it could go faster.

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2. From Inkjet Technology to Painless Injection via an Irish Company???

   Crospon, a medical device developer based in Galway, Ireland, has annnounced that it has entered a licensing agreement with computer technology giant HP for a drug delivery patch that they claim will be able to control the release of one or more drugs through a single patch applied to the skin. The technology has been developed by HP from its inkjet printer technology which delivers tiny jets of ink to very precise positions on paper. Apparently the patch uses tiny needles in place of jets to direct the drug through the skin and quickly into the bloodstream and is claimed to be virtually painless.

   Patch technology is not new but the existing technology uses medication to enable the drug to penetrate the skin which acts as a barrier. Crospon plans to manufacture the patches under license from HP and to and market them to the medical community.

   Crospon's work to date has been mainly in the areas of diabetes and gastroesophageal reflux disorder. Is it too much to hope that the patches might have a use in delivering MS treatments that currently have to be delivered by injection?

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3. Riveting Interviews with Young Persons Diagnosed with MS & their Parents

   The Accelerated Cure Project was started by engineer Art Mellor in 2001 when at the age of 37 he was diagnosed with MS. Also known as Boston Cure Project, this non-profit company is dedicated to curing MS by determining its causes. There is a link to its website on our Useful Links page.

   The project has published a very moving video of interviews with a number of young persons with MS in the US and their parents discussing the impact the diagnosis of MS is having on their lives. The 55 min video will be of general interest to any member but will be of special interest to any young person and/or their parents trying to come to terms with their MS. It can be viewed at Finding Our Way .

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4. Marathon Running with MS at Age 59

   59 year old Zoe Koplowitz completed her 20th New York marathon in 28 hrs 45 mins. Maybe not remarkable when the race was won by Paula Radcliffe in a time of 2hrs 23 mins 9 secs. But what is remarkable is that Zoe walked all the way with crutches and braces on her back and knee.

   Zoe has diabetes and was diagnosed with MS 30 years ago. After finishing, she commented that she wasn't getting any younger and her MS wasn't getting any better but she hoped to keep taking part in the race as long as she's able to keep getting around.

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5. Evidence of Epstein-Barr Virus in Multiple Sclerosis Brain Tissues

   There is growing evidence of a link between the very common Epstein-Barr virus and MS. See information on Epstein-Barr virus elsewhere on this page.

   Now investigators report finding evidence of the virus in the immune cells of the brains of 21 out of 22 persons with MS examined post mortem. However they are unable to say whether the virus is a cause of MS or its presence is as a result of MS.

   The study was carried out by Dr. Francesca Aloisi (Instituto Superiore di Sanita, Rome) and colleagues from Italy and the United Kingdom and was published online in the Journal of Experimental Medicine on November 5, 2007. It was funded jointly by the European Union, the Italian MS Foundation, and the Italian Ministry of Health. Interestingly, most of the brain specimens were supplied by the UK MS Tissue Bank which is funded by the MS Society of Great Britain and Northern Ireland.

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6. Important Changes to Disability Discrimination Act- MS included from Diagnosis

   The definition of disability is amended so that people with cancer, multiple sclerosis or HIV are, from 31 October 2007, covered from the point of diagnosis rather than from the point when the condition has some adverse effect on their ability to carry out normal day-to-day activities.

   Further information is available on the NIMSS site at NIMSS item on DDA and on the Equality Commission site at You are now covered.

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7. Visit the PatientsLikeMe site

   PatientsLikeMe is a unique treatment and outcome sharing community for people with life-changing diseases. It was launched in 2006 for ALS (Lou Gehrig's disease) and has recently expanded to include Multiple Sclerosis and Parkinson's disease. You can search for a particular treatment or symptom to find out the experience of over 2,300 persons. You can also join (it's free) and add your own treatments and symptoms to the database. Many of the contributors give permission for their individual details to be made public and these can be accessed on the site.

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8. Governance? Workshop

   The most pressing issue facing MS branches in NI is the structural vacuum created when MSUK suspended the NI Council almost 6 months ago. At least that was the view of the large attendance at the workshop on 26 July 2007. Members of the Foyle Branch were joined by colleagues from Strabane Branch expecting to be assisted in exploring possible forms of governance as a step in the restoration of a Council in NI. Instead the facilitators from CMWorks had been directed by the Governance Review group to discuss only branch development issues. Despite repeated indications of the frustration and annoyance felt by members, the CMWorks ladies were treated courteously and tried to stick to their brief . However, the continuing absence of a NI structure has potentially devastating consequences for branch attempts to access grants from Trusts and other NI bodies and for sustaining branches and, inexplicably, the Governance Review group excluded it from the workshop. Inexplicably because the unacceptable alternative would be that the CMWorks group was employed merely as a sop to give a veneer of independence to the consultation exercise.

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9. It Could Only Happen in Real Life - it's too Surreal for Fiction!

   According to a report on the Michigan Wood 8 website, Ben Carpenter, who has muscular dystrophy, was crossing a road in his wheelchair and didn't quite make the footpath before a truck moved off and the handles of his wheelchair were caught in the grill of the truck. Apparently oblivious of his stowaway passenger, the truck driver travelled 5 miles at about 50 mph before making a stop. Thankfully, Ben was uninjured and seemed remarkable unconcerned. He is quoted in the report as saying "I thought it was kind of like a fair ride. I don't remember feeling any bumps though. I must have, but the road must have been pretty smooth." His quoted comment that " It was fast, I know that. Faster than this chair was made to go" must be the understatement of the year.

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10. Testosterone May Benefit men with MS

    A small study of 10 men with MS suggests that testosterone may have a beneficial effect for men with MS. The study, reported in Archives of Neurology, May 2007; vol 64: pp 683-688, was carried out by a team of researchers from the the University of California at Los Angeles. They warned that the study was so small that further research is required before any general conclusions can be drawn. The fact that MS is much more common in women than men and evidence that MS often abates during pregnancy and that women with MS have lower levels of testosterone than those without all suggest a connection between hormone levels and MS. The men with an average age of 46 had MS for about 12 years on average. None was using disease modifying drugs. After a six-month observation period, the men applied a testosterone gel to their upper arms once daily for a year. This preliminary study found that testosterone treatment was associated with better scores on mental skills test and a 67% slowdown in loss of brain volume. The men's lean muscle mass also rose with testosterone treatment.

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11. Foyle Branch Meets Governance Review Group

    A representative group led by Chairperson, Peter Eakin, met with UK Vice-Chairperson, Judy Illsley, UK Board Secretary, Susannah Hughes and NI Temporary Manager, Ken Roulston on Thursday, 3rd May 2007. To borrow a phrase from the politicians, there was a 'frank exchange of views' with both sides agreeing to reflect on the exchange.

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12. Unanimous Support for Mediation at Disputed Meeting on 28 April

    A call for mediation as the only way to break the continuing impasse between the UK Board of the MS Society and the NI Council(suspended) received unanimous support from NI branches at a meeting in Antrim on Saturday last (28 April 2007). The constitutionality of the meeting had been challenged in a letter from UK Chairman, Mr Kennan, to all NI members. However the meeting went ahead and it remains to be seen whether the UK Board will take on board the passionately expressed hurt and dismay of the branches in NI at the actions of the Board.

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13. MS Gender Gap Doubles Over Last 60 Years in US

    Researchers at the University of Alabama at Birmingham School of Public Health report that the number of women to men with MS had increased from two to one in 1940 to four to one in 2000. They looked at the gender ratio following a Canadian study that reported in 2006 that the female-to-male MS ratio in Canada had increased from about 1.9-to-1 in 1931 to about 3.2-to-1 in 1980. The researchers suggest that these changes may be due to different environmental and lifestyle choices of women and men (e.g. use of cosmetics, hair dye, contraceptive pill etc.)

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14. NI Members Invited to Extraordinary General Meeting on 28 April

    Members throughout NI have been invited to attend an extraordinary general meeting convened by the Officers and Committee of MSSNI in Antrim on Saturday, 28 April to be informed of their account of events and to consider a number of resolutions regarding the way forward.

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15. Prospect of UK Finance for NI in Chairman's Latest Letter

    UK Chairman, Mr Kennan, has again written to members in Northern Ireland. He informs them that the UK Board has appointed Ken Roulston as an interim manager in NI on a short-term contract. Although Ken is identified as Managing Director of Finisco Business Solutions on the website of the IT business he ran with it's founding partner in Belfast, apparently he resigned from the company last year. Ken previously worked with Viridian-owned Sx3. According to a report in leading business magazine, Business Eye, he said he felt as if he was renting his career with Sx3 and he had long had a hankering to run a smaller company which was either his own or one he had an interest in. Since his current appointment is temporary, Ken can hardly regard it as the fulfillment of his hankering although he has resigned his position as Chairman of Disability Action from 29 March. The temporary position was filled through a Belfast agency.

    Mr Kennan also holds out the prospect of some UK money for NI. Proposals for as yet unspecified expenditure by the UK Board on MS services in Northern Ireland are to be presented to the UK Board. Investment by the UK Board in NI will of course be a welcome development but coming as it does in the middle of the current difficulties and announced in a letter from the Chairman to members regarding issues connected with those difficulties, it is likely to be regarded by some as a sweetener designed to promote support for the contentious actions of the Board. Any such suggestion is viewed with concern by the Board and is rejected as being contrary to the remit of a charity.

    The other news is that a "Governance Group" has been established under the leadership of UK Vice- Chair, Judith Illsley, to look at options for the future. No information is provided about the precise terms of reference or the procedures and decision making processes of this group. Three representatives of the suspended NI Executive, the NI Trustee and "representatives of the broader membership in NI" will be "invited to attend". Since the Society is "a strong member-led organisation" that wants "a change to arrangements for governing MSSNI that are more democratic, promote openness and accountability and allow more effective delivery of services to people with MS" it had been anticipated that the "representatives" of the broader membership would be elected on the basis of a democratic election among all the NI members. Instead the Governance Group is apparently talking to some individuals who have volunteered to meet with it. Branch officers have also been invited to meet the group.

    The Board "will also seek the involvement of appropriate external independent advisors from within NI" in the group and at first sight this appears to be a positive move but, if it is a response to the demand for independent mediation, it misses the point and confuses the situation by linking what could and should be a separate exercise of governance review with the continuing suspension of the existing constitutional governance body in NI. How can the Board expect the very persons it has suspended to participate until their suspension is lifted and their positions are restored? The call for mediation is in regard to resolving that continuing impasse in the best interest of persons with MS in NI.

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16. Russian Pianist with MS Performs Round the World to Raise Funds for MS Groups

    Russian pianist Olga Bobrovnikova was diagnosed with MS in 2000. Since then she has dedicated her love of music and the piano to raising awareness and funds in the fight against Multiple Sclerosis all around the world. She established the Mu-Sic Foundation, a non profit organisation that funds her performances and funnels ticket sales directly to local MS charities. Olga created the concept of Mu-Sic to generate awareness of MS by using music and musicians. It supports the work of MS Charities around the World. Further information on her and videos of her inspirational performances in support of MS around the world can be viewed on her website

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17. Strong Support For NI Council At Meeting

    There was strong support for the NI Council at a recent meeting attended by around 100 members of the society from throughout NI. A motion calling for the reinstatement of the Council was carried by a two thirds majority and there was unanimous support for a motion calling on the UK Society to avail of independent mediation to resolve any issues.

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18. NI Council Suspended

    Branches and Members throughout Northern Ireland will have been shocked by today's bombshell from the Trustee Council of the UK & NI MS Society which announced it had suspended The Northern Ireland Council. A statement issued by the trustees is reproduced below together with a link to a copy of a letter to be sent to all members in NI. A spokesman temporarily drafted in to NI has assured members and the public that there is no question of any financial impropriety but rather an alleged unsatisfactory working relationship

    Webmaster's comment: There are two sides to every dispute and the sooner the issues are clarified and the matter resolved the better for the Association and all the members.

    Statement:
    MS Society suspends council in Northern Ireland
    08 Feb 2007

    The MS Society of Great Britain and Northern Ireland has suspended the Council of the MS Society of Northern Ireland. The MS Society has assured people affected by multiple sclerosis that services will not suffer. At a board meeting this morning (8 February), the trustees of the MS Society of Great Britain and Northern Ireland voted to suspend the delegated powers of the council of the MS Society of Northern Ireland.

    MS Society Chief Executive Simon Gillespie said:

    "We have taken these steps with great reluctance as a result of a lack of cooperation from officers and senior staff at the MS Society of Northern Ireland, which we believe is not in the interests of people with MS.

    "The priority of the trustees is to make sure that the best possible support is available to everyone living with MS. Our short-term goal is to ensure that services provided to people affected by MS in Northern Ireland, particularly at the Resource Centre in Belfast, will continue to be provided.

    "In the longer term, we are putting in interim arrangements to make sure our members and branches in Northern Ireland are fully consulted over how the MS Society is run in the future. "And I want to personally appeal to staff and volunteers to work alongside us to ensure people with MS are not affected."

    MS Society Chairman Tony Kennan said:

    "The MS Society UK-wide provides a lot of support to the MS community in Northern Ireland and we want to strengthen our presence here. We want the MS Society in Northern Ireland to return as soon as possible to being an organisation run by local people, providing the best possible services to people with MS, as part of a UK-wide MS Society with all the benefits that brings."

    Letter

    A letter which you can download here has been sent to all members of the MS Society in Northern Ireland.

    (The Letter to Members is a pdf file and requires Adobe Reader which can be download free from .)
    

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19. WORMS AND MS

    Researchers in Buenos Aires decided to carry out a small study into whether the prevalence of MS around the world might be linked to levels of hygiene - levels generally being higher in developed countries. They speculated that the immune systems of persons exposed to such infections might develop regulatory cells that dampen the over-active immune response of persons with MS.

    They compared a dozen persons with relapse remitting MS already infected with either tapeworms, roundworms, nematodes, threadworms or pinworms to a dozen matched non-infected persons also with MS. They followed up the groups for four and a half years.

    They reported that the persons with MS had a total of three relapses between them as compared with 56 relapses among 10 of the 12 worms free persons.

    The groups were also subjected to a battery of medical and disability tests with the infected group consistently performing better than their comparators.

    The study was carried out by Jorge Correale, M.D., and Mauricio Farez, M.D., of the Raul Carrea Institute for Neurological Research, and colleagues and was reported in Ann Neurol 2007.61;1.

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20. PC RECEIVES PAYMENT FOR LATE DIAGNOSIS OF MS

    A policeman from Sussex who was referred to his GP in 1992 with possible MS was subjected to a series of tests in Eastbourne District General Hospital but was not informed that he had MS until 2003. He discovered that his condition was known to the medical staff as far back as 1995. He sued the Trust with the support of the Police Federation and received £10000 in an out of court settlement together with an apology. He had been told that there was nothing serious the matter and he had made financial and family commitments on that basis. He also believes the decision may have deprived him of access to treatment that might have helped his condition.

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Items posted 2006

1. AN AWESOME WHEELCHAIR

   How about an electric wheelchair that goes up steps, through snow, through fields or on a beach? This is just what a man in USA built for his wife who was frustrated by the limitations of her traditional chair. He named it the TANKCHAIR and is offering to manufacture and sell custom versions for any interested party. It took him two years to design and for every ten sold he promises to make one for charity. But wait for it - it runs on caterpillar tracks. Photos and videos of the chair can be viewed on his website.

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2. NEWS OF LDN IN MS PILOT STUDY

   According to a report on the Low Dose Naltrexone website, a clinical pilot study of LDN for MS has started in Italy and will conclude in six months. The study is designed to track levels of endorphins in patients in response to LDN.

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3. MORE EVIDENCE ON VITAMIN D LEVELS AND MS RISK

   A team from Harvard School of Public Health investigated levels of vitamin and risk of MS among more than 7 million US military personnel who had serum stored in the US Department of Defense Serum Repository. They reported the outcome in Vol. 296,No. 23, Dec 20, 2006 of The Journal of the American Medical Association.

   They found that the risk of multiple sclerosis significantly decreased with increasing levels of vitamin D in the blood among white personnel but not among black or hispanic personnel.

   Webmaster's comment:These findings add to a growing body of evidence of a link between levels of vitamin D and the risk of MS. Most of the research deals with the link between levels of vitamin D up to and at the onset of MS. There is no suggestion that taking vitamin D after onset will alter the course of the MS.

   Earlier postings on this page can be viewed at Vitamin D could help to prevent MS and Childhood exposure to sun may help to prevent MS

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4. EVALUATION OF A MS SPECIALIST NURSE PROGRAMME IN ENGLAND

   The MS Society has long argued for the appointment of Specialist MS Nurses. The Foyle Branch currently jointly funds a specialist MS nurse with the Western Health & Social Services Board and the branches in Strabane, Castlederg, Omagh and Enniskillen. A study reported in the November edition of the International Journal of Nursing Studies (.Int J Nurs Stud. 2006 Nov;43(8):985-1000) may be of interest to members.

   Researchers from The Florence Nightingale School of Nursing & Midwifery, King's College London, examined the impact of a programme of MS specialist nurses on MS health care provision and on the health and well-being of people with MS. They compared a group from regions where Specialist MS Nurses were being appointed with a control group from regions without any. Information related to care processes (information provision and care quality) and health outcome measures, hospital admissions, MS complications, health-related quality of life and disease impact was collected before the appointment of the MS nurses and then at 12 and 24 months afterwards.

   The researchers concluded that the specialist nurse programme had a positive impact on the provision of MS-related health care. However, there was very limited evidence that the programme led to any improvements in disease-related problems or health-related quality of life. A small but significant deterioration on the physical outcome measures was observed in the regions with nurses but the researchers suggested this was due to the fact that people with worsening health problems were more likely to contact the specialist nurse. They recommended that future research in this area should focus on the effects of specific interventions that nurses and other health professionals might employ in addressing the many problems confronting people with MS.

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5. MS AND YOUR FEELINGS by Allison Shaddy with a foreword by Stanley Cohan.

   Allison Shaddy is a clinical social worker and psychotherapist with 14 years of experience counselling chronically ill patients and their families. She was diagnosed with MS in 1995. Her book deals with a much neglected topic - how to relieve the psychological trauma (psychological numbing, denial and acceptance, guilt and depression, loneliness) often experienced when diagnosed with MS. The book outlines a number of strategies for coping derived from her years of counselling. Stanley Cohan is a neurologist. In addition to the foreword he contributes to a chapter on developments relating to drugs for MS.

   The book (ISBN: 089793489X) in paperback format was published by Hunter House in the US in October and has been warmly welcomed by the MS Foundation in the US. It is expected to be published in the UK in February 2007 at a list price of £11.99.

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6. UNIVERSITY OF ULSTER RESEARCH REPORTS

   The Health and Rehabilitation Sciences Research Institute, University of Ulster, Jordanstown has recently reported on three research projects in which members of the Foyle Branch participated. The reports have been published in various research journals. A brief comment on each is provided here.

   • EFFICACY OF TRANSCUTANEOUS ELECTRICAL NERVE STIMULATION (TENS) FOR CHRONIC LOW-BACK PAIN IN A MULTIPLE SCLEROSIS POPULATION: A RANDOMIZED, PLACEBO-CONTROLLED CLINICAL TRIAL.

     This study investigated the pain control effects of self-applied transcutaneous electrical nerve stimulation (TENS) on chronic low-back pain among persons with MS. Complex scientific measures and statistical analyses were applied and the team reported that, although some 'clinically important' differences were observed, these were not statistically significant. The report was published in the November/December 2006 Journal of Pain.

   • COMPARISON OF PELVIC FLOOR MUSCLE TRAINING, ELECTROMYOGRAPHY BIOFEEDBACK, AND NEUROMUSCULAR ELECTRICAL STIMULATION FOR BLADDER DYSFUNCTION IN PEOPLE WITH MULTIPLE SCLEROSIS: A RANDOMIZED PILOT STUDY

     Interventions such as Pelvic Floor Training and Advice (PFTA), Electromyography Biofeedback (EMG) (Electromyography is a test that assesses the health of the muscles and the nerves controlling the muscles.) and Neuromuscular Electrical Stimulation (NMES) ( an electrical means of stimulating nerves and muscles) are often employed to improve bladder function. Bladder dysfunction is very common among persons with MS and this study sought to determine the effectiveness of combining all three interventions over a nine week period. Participants were randomly allocated, under double blind conditions, to one of the three groups: Group 1 (PFTA); Group 2 (PFTA and EMG); and Group 3 (PFTA, EMG Biofeedback, and NMES). The team reported that Group 3 demonstrated greater benefit than Group 2, with Group 1 showing less improvement. The differences showed statistical significance and they concluded that the combination of these interventions may reduce bladder dysfunction in MS. The report was published in Neurourol Urodyn. 2006;25(4):337-48.

   • MEASURING QUALITY OF LIFE IN MULTIPLE SCLEROSIS: NOT AS SIMPLE AS IT SOUNDS

     Data that was available from a clinical study was used examine the effectiveness of a quality of life measure among persons with MS known as the Leeds Multiple Sclerosis Quality of Life scale. Complicated correlations and statistical analyses were employed but the team experienced difficulty in interpreting the data and recommended that health-rating scales should be developed on the basis of clear conceptual definitions. The report was published in Mult Scler. 2005 Dec;11(6):708-12

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7. FORM OF VITAMIN B3 REDUCES DISABILITY IN MOUSE MODEL OF MS

   Nicotinamide, a form of niacin (vitamin B3), significantly prevented neurological disability in a mouse model of MS. Scientists from the Division of Neuroscience, Children's Hospital Boston, Harvard Medical School, and Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts reported their findings in the September 20th issue of the Journal of Neuroscience (J. Neurosci 2006; 26(38):9794 -9804).

   The researchers found that the treated mice had significantly lower disability scores and little or no progression, compared to control animals. They suggest that nicotinamide may have a protective effect against progressive neurological disability associated with MS.

   Vitamin B3 is already used clinically to treat pellagra, high cholesterol and other disorders. This work is preliminary and the researchers warned that the doses involved in their study would equate in humans to much higher levels than are currently used clinically. Clinical trials and safety studies would have to be carried out before any conclusion could be reached about a possible application in MS.

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8. TETANUS VACCINATION REDUCED THE RISK OF MS

   Dr. Miguel A. Hernan and colleagues from Harvard School of Public Health investigated the association between tetanus vaccination and MS risk by conducting a systematic review of studies from a number of databases between 1966 and 2005. They concluded that tetanus vaccination reduced the risk of MS by about one third.

   They recommended further studies of timing of vaccination and the number of doses involved.

   The study was reported in the July 25, 2006 issue of Neurology

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9. CHILDREN OF MEN WITH MS TWICE AS LIKELY TO DEVELOP MS

   Neurologists from the Mayo Clinic, the University of California at Berkeley and Kaiser Permanente in Oakland, California compared the incidence of MS among children of affected adults. They concluded that children of men with MS are twice as likely to develop MS as children of women with MS.

   Twice as many women as men develop MS which is generally thought to result from a combination of a genetic susceptibility and an environmental factor (possibility linked to one or more viruses). The authors suggested that the different rates among men and women are likely to reflect differences in genetic susceptibility. Their hypothesis was that since men are more resistant to MS, so they need stronger or a larger number of genes in order to develop MS, and then pass these genes to their children. Their children would therefore inherit a much higher genetic susceptibility than the children of affected women.

   The investigators noted that because women with MS have fewer children than women who don't have the disease, it is not possible to determine whether the effect is related to over-transmission of genetic susceptibility due to some factor intrinsic among men, or under-transmission among women. They also stressed that the risk of having MS if a person has an affected parent is increased by about 20-fold compared to not having an affected parent; the additional risk by virtue of having an affected father is not sufficient to affect the decisions of persons with MS about whether to have children.

   The research was reported in the July 25, 2006 issue of Neurology

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10. TYSABRI GIVEN NEW RESTRICTED APPROVAL BY US FDA

    The US Food and Drug Administration (FDA) has, as anticipated, given new approval of Tysabri for treatment of relapsing forms of MS under a special restricted distribution programme.

    Under the licence, issued on 5 June 2006, tysabri may not be administered alongside other treatments such as beta-interferon because not enough is known about how it might interact with other drugs. Its use is also restricted to patients who have not responded adequately to, or cannot tolerate, other treatments for MS. Tysabri will only be available through a Risk Management Plan, called the TOUCH Prescribing Program. In order to receive Tysabri, patients must talk to their doctor and understand the risks and benefits of Tysabri and agree to all of the instructions in the TOUCH Prescribing Program. The drug, which is taken by monthly intravenous injection, will only be dispensed at registered infusion centres to be established across the US.

    Tysabri was initially approved by the FDA in November, 2004, but was withdrawn by the manufacturer in February 2005 after three patients in the drug's clinical trials developed progressive multifocal leukoencephalopathy (PML), a serious viral infection of the brain. The approval is based on positive results from two clinical trials showing that Tysabri significantly reduced the risk of sustained progression of disability and the rate of clinical relapse in those with relapsing MS.

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11. JK ROWLING MAKES BIG CONTRIBUTION TO MS RESEARCH CENTRE

    According to a report in the Scotsman (20/04/2006) the Harry Potter author has made a large donation to fund research into MS. She is the Patron of the MS Society Scotland. Her mother died aged 45 in 1990 after developing complications from rapidly progressive MS. She made the undisclosed donation through the MS Society Scotland which has contributed £2.1 million towards a £2.5 million project at Edinburgh University. The project is to be based at the Centre for Regenerative Medicine at Edinburgh Royal Infirmary.

    The work will look at how experts can repair damaged parts of the nervous system in patients and prevent further deterioration. The scientists hope the centre will strengthen links with other British and international MS experts in a bid to reach a better understanding of the condition.

    Rowling donated £1 million towards MS research in Scotland in 2003. She is quoted as saying: "It means a great deal to me to be able to provide support for this much-needed research centre."

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12. EPSTEIN-BARR VIRUS AND MULTIPLE SCLEROSIS

    Epstein-Barr virus (EBV) is a member of the herpesvirus family and one of the most common human viruses. Most people become infected with EBV sometime during their lives. Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood.

    When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis about 40% of the time. The most common symptoms of infectious mononucleosis are fever, sore throat, and swollen lymph glands. Although the symptoms usually don't last more than a month or two, EBV remains dormant or latent in a few cells in the throat and blood for the rest of the person's life. EBV is also believed to establish a lifelong dormant infection in some cells of the body's immune system.

    The cause of MS is not known although research suggests that there may be at least two factors involved - a virus and an immune system effect. The most widely held view is that a virus or more than one virus may trigger a reaction in a person's own defence or immune system which causes it to attack its own myelin as though it was a virus. This is known as an auto-immune reaction and, although there is no evidence of MS being transmitted genetically, it is believed that people affected by MS may have a genetic factor that leaves them vulnerable. Research has attempted to identify viruses that may be involved, but results to date, although showing promising progress, have not yet fully succeeded. Now two recent studies provide supporting evidence of a link between EBV & MS.

    According to a report posted this month online on the Archives of Neurology website (Arch Neurol. 2006;63:(doi:10.1001/archneur.63.6.noc50328)), blood samples had been taken from about 100000 members of a Californian health plan between 1965 & 1974 and stored at low temperature. Eventually 42 persons with diagnoses of MS were identified & followed up between 1995 & 1999. A relationship between the level of EBV antibodies and MS emerged. One outcome was that the relative risk of MS associated with a 4-fold increase in antibodies was 2.1.

    The second study reported in the Annals of Neurology (Ann Neurol 2006;59:499-503.) was carried out by researchers from The Harvard School of Public Health, Boston, who statistically combined 14 studies conducted in the US, Europe, and Australia to develop an overall view of the connection between infectious mononucleosis and MS. They report that the combined relative risk of MS after infectious mononucleosis was 2.3. This suggests that persons who get infectious mononucleosis while growing up are twice as likely as the general population to get MS. These researchers suggests that the development of a safe & effective childhood vaccine against EBV might protect some persons from later MS.

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13. SATIVEX SPRAY UPDATE DISAPPOINTING

    GW Pharmaceuticals announced disappointing preliminary results on 17 March 2006 from a Phase III study of Sativex in the relief of spasticity in people with MS. Sativex is licensed in Canada and is obtainable under special permit in UK.

    The study involved persons with MS who had failed to respond to other available anti-spasticity treatments. Multiple sclerosis patients with spasticity who used the under-the-tongue spray and stuck to the trial's protocols (continued the treatment to the end) did benefit. But an "intention to treat" analysis (all study patients whether or not they continued the treatment to the end) found no statistically signitficant advantage compared with a placebo.

    The Company reported that Professor Mike Barnes, Professor of Neurological Rehabilitation, University of Newcastle, and President of the World Federation of neuro-rehabilitation, said: "This study explored the effects of Sativex in a high need patient population who, by definition, had exhausted all available anti-spasticity medication and yet remained in need of treatment. As a clinician, the positive per protocol result confirms to me that Sativex has a valuable role in treating those patients for whom there are no further treatment options available."

    GW Pharmaceuticals said that this study is one of several studies included within their Phase III clinical programme for Sativex in the relief of peripheral neuropathic pain and cancer pain as well as pain and spasticity in multiple sclerosis. They have expressed optimism that the outcome of trials in the other two areas will be more positive.

    The company says that it will await the outcomes of all the trials before deciding whether to include tretament for MS pain in any application for approval

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14. US FDA ADVISORY COMMITTEE RECOMMENDS SECOND CHANCE FOR TYSABRI

    In reaching its unanimous recommendation, the committee took account of three studies, all supportive of the drug, published recently in the New England Journal of Medicine.

    According to one of the studies, patients taking Tysabri had 92% fewer MS lesions on MRI than controls. A second study showed that Tysabri in combination with Avonex (interferon beta-1a) was significantly more effective than Avonex alone at preventing relapses over two years. However, three of the participants in this study developed PML and two died. Tysabri was withdrawn as a result See item on this page.

    The third study reviewed records of more than 3,000 patients who received Tysabri in clinical trials and found no new cases of PML beyond those that had already been reported. The advisers also voted 7-5 to recommend Tysabri as a treatment for relapsing forms of MS, with mandatory controls to ensure that any new cases of PML are found quickly.

    The FDA(U.S. Food and Drug Administration) is not bound by the recommendations of its advisers but generally follows them.

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15. BEE STING THERAPY FOR MS DID NOT PRODUCE IMPROVEMENT SAYS STUDY REPORT

    We posted an item in December 2004 about a woman who believed self administered bee sting venom had a beneficial effect on her MS.

    The results of a randomised crossover study of 26 people with either relapsing remitting or secondary progressive MS between the ages of 18 and 65 in the Netherlands was published in the journal Neurology (2005. Vol. 65, part 11, pages 1764-1768) in December 2005. The study was supported by Multiple Sclerosis International (Amsterdam)

    The group was randomly divided into two, one half receiving bee sting therapy and the other receiving no treatment. After 24 weeks the treatment groups were swapped for a further 24 weeks. Live bees in gradually increasing numbers up to a maximum of 20 were used to administer bee stings three times per week.

    The results showed that treatment with bee stings did not reduce the number of relapses that a person had or the number of areas of new damage found in the brain or spinal cord nor did they have any beneficial effect on fatigue or quality of life.

    Webmaster's comment: As reported in the 2004 item, bee venom can cause a fatal anaphylactic allergic response in some people. The participants in this study were screened for this allergy before participating in the study and did not experience any serious adverse reactions.

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16. SCIENTISTS SAY EXPOSURE TO ALUMINIUM LINKED TO MS

    According to a report on the Medical News Today website, scientists at Keele University have discovered the first evidence of a link between human exposure to aluminium and multiple sclerosis. The scientists found a very high level of aluminium excreted in the urine of persons with MS, particularly in the relapsing-remitting form of the disease, leading them to speculate that exposure to aluminium may be the hitherto undiscovered environmental factor in MS.

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17. NEW YORK CENTRAL STATION EXHIBITION OF PHOTOS OF PERSONS WITH MS

    A celebrated photographer, Joyce Tenneson, was sponsored by Berlex, the firm that produces betaseron, a proprietary form of beta interferon, to exhibit a series of photographs of persons with relapsing/remitting MS who are all on betaseron in New York's Central Station last year. Each photograph is accompanied by an account of the attitude of the person to MS and the impact of the diagnosis on his or her life. While the sample is not in any way representative of the vastly differing degrees of disability associated with MS & serves a marketing function for Berlex, it demonstrates the heartening determination of the participants to lead their lives to the fullest and most active extent.

    Although the exhibition is over, the photos and interesting accounts can be viewed on a Berlex website entitled The Image of MS.

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18. EXPERIENCES OF CHILDREN AND ADOLESCENTS LIVING WITH MULTIPLE SCLEROSIS

    An interesting study of the experiences of children & adolescents living with MS has been published in the Journal of Neuroscience Nursing. Little is known about their experiences and the purpose of the small study was to learn directly from children and teens what it is like to live with the diagnosis of MS in the hope that it would increase understanding of strategies for optimizing nursing care.

    Twelve children and adolescents between the ages of 8 & 18 with relapsing-remitting MS, 7 female and 5 male, participated in the study. All were treated in the Pediatric Multiple Sclerosis Clinic at the Hospital for Sick Children, Toronto. They received their diagnosis as recently as 5 months to as long as 10 years prior to the study. The participants answered a structured questionnaire and were individually interviewed.

    The researchers reported that despite varied experiences of the participants, common themes emerged from the study.

    The young people were unfamiliar with MS when diagnosed and had a range of feelings about the diagnosis. They gradually learned about MS from a variety of sources including just living with the disease. Over time, they adapted to the effects of MS and incorporated changes caused by MS into their lives. Most participated in social and recreational activities typical of their age group & although their lives were different because they had MS, they felt unchanged in many ways. They reported both positive and negative changes in their relationships after diagnosis. Effects such as heat intolerance, fatigue, cognitive difficulties, headaches, numbness, & hand tremor presented challenges but they developed various coping strategies with the assistance of supportive people in their lives. They wanted to get on with life and had hopes & plans for the future. Although their MS helped to shape their self-identities, it was only one component of who they are.

    The full report which identifies a number of actions that nurses dealing with young persons with MS and their parents should consider is available at the Medscape website

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19. MINISTER PROMISES WAITNG LISTS FOR MS TREATMENT IN NI WILL DISAPPEAR WITHIN 2 YEARS

    There are currently about 160 persons with MS in NI on a waiting list, whose neurologists have determined they would benefit from interferon treatment . This is caused by a combination of insufficient money for the drugs and a shortage of specialist MS nurses who are needed to train recipients of the drug in how to self-administer the injections.

    Shaun Woodward, the Minister with responsibility for health, has just announced an allocation of £ 2million towards an elimination of the waiting list within two years. Interferon is not a cure for MS but it has proven benefits in increasing the periods of remission between bouts of inflammation, particularly in cases of young persons with relapsing/remitting MS. This delays the progression of MS and helps to prolong independence and a more normal quality of life for recipients.

    The Minister paid special tribute to a presentation by the NI MS Society before Christmas which he said so impressed him that he decided to implement steps to bring the waiting list to an end. This is welcome news for the MS community in NI.

    Inset is a photo of Shauna & Cliona from the Foyle Branch with the Minister at the press conference. See also the item on the Activities & Events page.

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20. SHAKE, RATTLE & ROLL YOUR WAY TO BETTER MOBILITY & BALANCE?

    

    A team from the Department of Physical Medicine and Rehabilitation, Medical University of Vienna, Austria, examined whether whole-body vibration (scientifically controlled mechanical oscillations on a special machine) in comparison to a placebo administration leads to better postural control, mobility and balance in patients with MS.

    Twelve MS patients with moderate disability were allocated either to the vibration group or to the placebo group. The placebo group were also placed on the machine but were subjected to a similuated experience instead of the controlled vibrations. The trial was 'double blind' in which none of the participants was aware of the differences in the experiences.

    The results of this small pilot study indicated that whole-body vibration may positively influence the postural control and mobility in multiple sclerosis patients. The effects were strongest one week after the intervention began

    The research was reported in the December 2005 volume of the journal Clinical Rehabilitation where the accompanying image was included with the permission of Irschitz GmBH.

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21. EFFECTS OF BETA-INTERFERON ON ADOLESCENTS & CHILDREN

    To date there has not been any large scale controlled study of the effect of interferon-beta and other similar drugs on adolescents and children with MS although they are increasingly being used to limit the effects of MS.

    However, a recently reported Italian study provides encouraging information on the safety and effectiveness of these drugs based on observations of 81 young people who were treated with these drugs.

    The average age of onset of MS was 12.4 years and on average they started treatment 19.7 months after onset. After an average of 36 months of treatment, the annual relapse rate decreased from 2.8 to 0.5 and the mean EDSS score remained constant at 1.4. The EDDS is a scale used for rating the level of physical disability ranging from 0 - no disability to 10 - maximum disability.

    Clinical side effects were recorded in 52 cases but these were mainly transient, although 3 stopped the treatment and a number of others either changed drugs or altered their doses. 24 also had reduced white blood cell count but this was also transient in 22 cases.

    The authors' encouraging conclusion was that the treatment was generally well tolerated and it reduced the relapse rate and the progression of the disease in most cases.

    The study was reported in the December 2005 edition of The Italian Journal of Neurological Science (Neurol Sci. 2005 Dec;26 Suppl 4:s183-6.)

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Items posted 2005

1. CANNABIS SPRAY IMPLICATED IN DEATH OF DIABETIC

   It seldom rains but it pours - at least that seems to be the case recently with cannabis related news. Hot on the heels of the item on cannabis & schizophrenia posted here on 15/12/2005, comes disturbing media reports of the inquest into the death of Mrs Anderson, a retired supermarket supervisor, while taking part in a trial on the use of sativex spray in the treatment of diabetes. The trial was supervised by a diabetes expert who told the inquest that he was investigating whether cannabis could provide relief from severe pain experienced by some diabetic sufferers.

   The family told the inquest that within hours of taking her first dose she developed disturbed behaviour, telling her family that police had planted drugs at her home and officers were circling in a helicopter. A few days later, the level of the drug was reduced after Mrs Anderson's family contacted the hospital to say she was confused and intoxicated. After taking the drug for 28 days, Mrs Anderson was admitted hospital where her physical condition dramatically deteriorated and she died.

   The coroner concluded : "On the balance of probabilities, an idiosyncratic reaction to a trial drug (either alone or in combination with other medications) was at least a significant contributory factor to the initiation of this illness."

   Webmaster's comment:Hopefully this was an unusual or rare reaction that is unlikely to be repeated. Nevertheless it does nothing to generate confidence in the safety of cannabis, particularly in the light of the evidence of a link between cannabis and schizophrenia reported on this page.

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2. SMOKING CANNABIS & SCHIZOPHRENIA - A DISTURBING LINK

   Recent studies have reported some benefits from cannabis & cannabis extracts for persons with MS and there is growing interest in these encouraging developments among the MS community. Check the cannabis & sativex spray items on this page. Persons considering the use of cannabis should be aware that there is a large body of research linking the regular smoking of cannabis with schizophrenia.

   According to Schizophrenia.com, a non-profit web community, people were 4.5 times more likely to be schizophrenic at 26 if they were regular cannabis smokers at 15, compared to 1.65 times for those who did not report regular use until 18.

   Recently a team from New York's Albert Einstein School of Medicine, used a new scanning technique called diffusion sensor imaging to look into the brains of adolescent cannabis smokers, schizophrenia patients and healthy non-drug users.

   The team leader, Dr Manzar Ashtari, said: 'What we saw should cause alarm because the type of damage in cannabis smokers' brains was exactly the same as in those with schizophrenia and in exactly the same place in the brain. To me, this is proof of the damage cannabis can do.' The outcome was reported at a recent meeting of the Radiological Society of North America.

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3. OUTCOME OF FOLLOW UP STUDY OF EFFECTS OF CANNABIS EXTRACTS ON MS

   Dr. J. P. Zajicek & colleagues from Peninsula Medical School in Plymouth have just reported on their follow up study of the effect of cannabis extracts & synthetic cannabinoids on MS. In the original study involving 600 persons(reported here 07/11/2003) over a 14 week period, there was some improvement in mobility & pain reduction reported by participants compared with those on a placebo. About 80% of the original group agreed to remain in the treatment for 12 months. Patient rating scales showed highly significant effects of active treatment on pain, spasms, spasticity, and sleep although only small improvements were registered in the Ashworth spasticity scale score & the Rivermead Mobility Index. Dr. Zajicek's group concluded that there is an urgent need for a long term study in progressive MS to establish whether delta-9-THC (the cannabinoid involved) has a role in long term disease treatment. Their results are reported in the December issue of the Journal of Neurology, Neurosurgery and Psychiatry.

   Details of a limited UK licence to import sativex (cannabis) spray are reported on this page

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4. SCIENTISTS CLAIM BREAKTHROUGH IN UNDERSTANDING MECHANISM OF NERVE SIGNAL TRANSMISSION

   According to a news release from the University of Edinburgh, scientists there have made an important advance in understanding the mechanism by which signals are transmitted along nerves. The say they have identified two proteins that link the formation of the myelin sheath with the development of the nodes that facilitate the rapid movement of signals between brain and muscles. They hope that the discovery of these proteins will help them to find ways to improve nerve conduction in patients with conditions such as MS where the myelin sheath is attacked. The news release can be viewed on University of Edinburgh website

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5. STEM CELL TREATMENT CLAIM

   There has been recent press & TV coverage of a person with MS who paid a substantial sum to undergo stem cell treatment at a private clinic in Rotterdam. According to reports, wheelchair bound, 19 year old Amanda Bryson, from Inverness, paid about £12000 for the treatment and claimed she felt an immediate improvement. The treatment involved injecting stem cells from an umbilical cord into the back of her neck on either side of her spine. She says she is now able to do some walking every day. The controversial treatment is not available in the UK.

   The MS Society has issued the following statement:

   "The potential for stem cell therapy to repair the damage caused in multiple sclerosis is well recognised. The MS Society is already funding research in Bristol and has recently committed more than £1 million to establish a centre for myelin repair in Cambridge. Research into stem cells and MS is, however, still at an early stage. We cannot comment on the case of the lady who has been reported as receiving a form of stem cell treatment in Holland. MS is a very variable condition which affects people in different ways. In view of possible risks, we do though believe that great caution is needed when considering any unorthodox treatment which has not been subjected to rigorous trials and review."

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6. UK PERSONS WITH MS ABLE TO GET CANNABIS SPRAY (SATIVEX)

   MS patients in the UK are to be able to get a cannabis-based pain-relief drug from their doctor for the first time, it has just been announced. Sativex has already been licensed for use in Canada to relieve pain in people with MS. The Home Office has now said the drug can be imported to the UK for individual patient's use. The prescription of Sativex by a GP will require a Home Office licence. The GP will have to take responsibility for the prescription of the unlicensed drug, which will have to be imported from Canada for that particular patient. Primary care trusts could decide to fund the treatment on the NHS. Otherwise, the drug will cost patients approximately £4 a day. The government has asked a watchdog, the Commission on Human Medicines, to monitor the safety of Sativex.

   Kieran Harris, Director, NI MS Society, has welcomed this development because of evidence that it helps in pain and spasticity relief for some. He confirmed that it will not be beneficial to everybody but at least there will now be an opportunity for its efficacy in individual cases to be determined.

   Post your view on the new MSFoyle Forum.

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7. CHARITABLE TRUST ESTABLISHED TO SEEK FUNDING FOR LDN RESEARCH

   The LDN Research Trust is a charity which aims to raise £500,000 initially, to get low-dose naltrexone (LDN) into clinical trials. It is intended that the first trial will test the response to LDN as a treatment for Multiple Sclerosis. Further trials are planned to test the therapeutic response in certain other auto-immune connditions.

   The Charity was set up by a group of people with MS who say that LDN works for them. The website declares it is non profit making and no salaries or wages are taken from the funds. Only expenses for the running of the Charity are taken and these are at the actual cost.

   See the item on Low-Dose Naltrexone (LDN) & MS posted below on 31/08/2005 and the views and experiences posted on the new MSFoyle Forum.

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8. WOULD COOLING THE BODY HELP PERSONS WITH MS EXERCISE BETTER?

   Aerobic exercise is thought to help persons with multiple sclerosis fight fatigue, one of the most common symptoms of the disease. Yet MS also appears to cause the body to heat up more quickly, compromising the ability to exercise. New research at at Buffalo University in the USA will investigate if cooling the body before or during exercise allows persons with MS to exercise longer, and which method of cooling is most effective. The study also will determine the effects of a 12-week aerobic exercise program on fitness, core and skin temperature, and heat flux in MS patients.

   The study is funded by a $449,999 grant from the National Institute on Disability and Rehabilitation Research, U.S. Dept. of Education.

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9. WHEN TO DISCLOSE A DIAGNOSIS OF MS?

   According to a report in the Journal of Neurology (J Neurol. 2005 Nov 28; [Epub ahead of print]) a team from the Department of Neurology at the Patras Medical School in Greece invited 1200 MS patients to respond to a questionnaire regarding their attitudes to the timing of disclosure of the diagnosis of MS. Of 657 who responded, 91% favoured immediate disclosure. 44% reported that they had immediate disclosure, 29% were informed within 1-3 years and 27% later.

   Post your view or experience on the new MSFoyle Forum.

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10. AWARENESS & FUNDRAISING PROGRAMME FOR SCHOOLS LAUNCHED IN NI

    Popular BBC Northern Ireland presenter Donna Traynor recently launched The MS Society, NI's innovative new Awareness and Fundraising Programme for Schools. The programme, entitled 'Titan's Leaps and Bounds Champion Challenge', aims to encourage primary school children across Northern Ireland to 'hop, skip and jump' to help those affected by MS in their local community.

    Commenting on her new role as Patron of 'Titan's Leaps and Bounds Champion Challenge', Donna said "I am proud to be working with The MS Society, NI, on this exciting new venture which encourages children to exercise and keep fit while having fun and helping people who are living with MS."

    The MS Society, NI, is now hoping that primary schools in the Derry area will be ready and roaring to accept Titan's Challenge. Commenting on behalf of the Foyle branch of the MS Society, NI, Terry McNamee, Schools Link Officer for the area said "We believe we have developed a programme which will capture the imagination of children across Northern Ireland whilst being teacher friendly and fitting in with the school curriculum. We hope that schools will be willing to lend us their much valued and much needed support." 'Titan's Leaps & Bounds Champion Challenge' is an awareness/fundraising programme aimed at encouraging primary school children to engage in some form of sponsored physical activity ie dancing, swimming, skipping etc.

    If you are interested in finding out more about how to become involved in Titan's Leaps and Bounds Champion Challenge, please contact the Foyle Branch of the MS Society, NI, (028 71 360831).

    Photograph at launch on Activities & Events page

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11. LOW-DOSE NALTREXONE (LDN) & MS

    The use of LDN as a treatment for multiple sclerosis has been widely publicised on the internet.

    Naltrexone is licensed in the UK as a treatment for people addicted to opiates, such as heroin. It blocks the access of opiates in the brain, thereby reducing or eliminating the pleasurable feelings associated with these drugs. It is only available under supervision in specialised clinics and doses range from 50 to 150mg a day for three days a week. Those promoting its use in MS recommend much lower doses of 3 to 4.5mg, where it is referred to as low-dose naltrexone.

    There has not been any clinical assessment of its use in MS either on its own or in combination with other treatments & reports of beneficial effects are purely anecdotal.

    The MS Society UK website has an excellent article written by Dr. Alasdair Coles after a meeting in Cambridge on the 27th May 2004 with Dr. M.R. (Bob) Lawrence, a retired GP who is the leading advocate of LDN use in the UK for people with MS. This article can be viewed at Dr Coles' article

    Webmaster's comment: Apparently some persons have been prescribed LDN by their GPs but others have bought it over the internet. Members are strongly advised not to self-prescribe but to discuss it with their GP or neurologist. Dr Coles points out that some neurologists have expressed concern about a possible conflict with standard treatments because naltrexone is believed to act by boosting the function of the immune system whilst the standard approach to the treatment of MS is to suppress the immune system as the disease is believed to be due to excessive and inappropriate immune activity.

    Post your view or experience on the new MSFoyle Forum.

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12. PREGNANCY OUTCOMES DURING TREATMENT WITH BETA INTERFERON IN WOMEN WITH MS

    Patients are advised to stop interferon-beta when planning pregnancy, but some patients have become pregnant on the drug. A study by Dr. Sandberg-Wollheim, University Hospital, Lund, Sweden; Serono, Inc., Drs. Lopez-Bresnahan, Chang, and Francis, D. Frank, Rockland, MA; Serono , M. Stam-Moraga, Geneva, Switzerland, (Dr. Goodwin, Department of Obstetrics and Gynecology, University of Southern California; and Dr. Giesser, Department of Neurology, University of California, Los Angeles examined individual patient data from eight clinical trials with IFNbeta-1a.

    Of 3,361 women in the studies, 69 pregnancies were reported, of which 41 were patients receiving (or who had stopped receiving within 2 weeks prior to conception) IFNbeta-1a. The 41 pregnancies resulted in 20 healthy full-term infants, one healthy premature infant, nine induced abortions, eight spontaneous abortions, one fetal death, and one congenital anomaly (hydrocephalus). The rate of miscarriage was marginally higher than in the general population, but these results were not statistically significant and larger studies are needed to explore this question further.

    Until more exposure data become available, patients remain advised to stop IFNbeta therapy before becoming pregnant.

    (Neurology. 2005 Aug 10; [Epub ahead of print])

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13. IS THIS BETTER NEWS FOR TYSABRI?

    Biogen & Elan have announced (9 August 2005) the findings of their safety evaluation of Tysabri. The companies had previously reported 3 confirmed cases of PML, 2 of which were fatal. Almost 2000 patients from the clinical trials participated in the evaluation. No new cases of PML were detected.

    Whaijen Soo, MD, PhD, senior vice president, Medical Research, Biogen Idec. Is quoted as saying, "Our ongoing TYSABRI safety evaluation is a rigorous medical and scientific undertaking that has been led by some of the world's leading experts in neurology and neuroradiology. Given the high unmet medical need in MS and the therapeutic benefit we have seen with TYSABRI, we are encouraged by these safety findings."

    Lars Ekman, MD, PhD, executive vice president and president, Research and Development, Elan said, "The findings announced today are an important milestone in understanding the appropriate benefit-risk profile for TYSABRI. Patient safety remains our top priority. We are committed to finalizing the safety evaluation for Crohn's disease and rheumatoid arthritis, which is progressing well and on track to be completed by the end of the summer. We look forward to working with regulatory authorities to determine the path forward for TYSABRI.

    There is some guarded speculation that limited approval of Tysabri for severe MS patients in the US could be granted during 2006. Further information on this page at Tysabri (Antegren)Shock Withdrawal

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14. CIGARETTE SMOKING AND PROGRESSION OF MS

    Some studies have reported an increased risk of MS among smokers. (Read an item posted here on 07/11/2003 Smoking increases risk of MS )

    A research team from the Department of Epidemiology, Harvard School of Public Health, Boston, has now studied the association between smoking and progression of multiple sclerosis. The outcome was reported online by the journal Brain in March 2005. To assess the association between smoking and progression of multiple sclerosis, they carried out a study of 201 multiple sclerosis cases with a relapsing-remitting onset and 1913 controls. They report that the results support the hypothesis that cigarette smoking is associated with an increased risk of multiple sclerosis and suggest that smoking may be a risk factor for transforming a relapsing-remitting clinical course into a secondary progressive course.

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15. SPOUSES LIVING WITH MS

    The spouse of a person with MS often assumes the carer's role. An interesting report of research to investigate the experiences of persons whose spouses have MS has recently been published in the Journal of Neuroscience Nursing (J Neurosci Nurs. 2005; 37 (1): 20-27. ©2005 American Association of Neuroscience Nurses).

    The study was carried out under the supervision of an associate professor and chair of the adult health department at the University of North Carolina-Greensboro School of Nursing. The data were collected by nurse counselors and a senior nursing student research assistant. The university's institutional review board approved the research. 8 men and 4 women carers participated in a 2-hour focus group. The husbands' average age was 50 and the wives 55. The length of time since diagnosis ranged from 2 to13 years.

    The researchers report that 4 major themes emerged: caregiver roles, need for information, relationship changes, and barriers. The researchers found that there were gender differences in how the participants experienced their roles and expressed their feelings. The men acted as protectors of their wives' time, energy, and employment opportunities and were angry at those who did not understand the effects of MS on its sufferers. They demonstrated their support by assuming more responsibility for household management, participating in giving injections, and going with their spouses to see their physicians. The women described with great feeling major lifestyle changes and role reversals. They became advocates to help their husbands maintain independence and existing roles.

    This was a small study that provides an important insight into the experiences of carers whose spouses have MS. The very detailed and interesting report can be read in full at the Medscape Website

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16. SINGLE GENE LINKING MS, RHEUMATISM & HEART DISEASE DISCOVERED

    Researchers in the fields of MS, rheumatism and cardiovascular (heart and blood vessel) disease in Sweden have identified a single gene variant linking these conditions. It is the first identified gene to link autoimmune diseases with cardiovascular diseases. An estimated 20-25 per cent of the population carry this variant of the gene. The researchers discovered that people with the variant ran a 20-40 per cent greater risk of developing rheumatism, MS or a myocardial infarction (destruction of heart tissue resulting from obstruction of the blood supply to the heart muscle). A spokesperson for the researchers believes that this gene variant may be one of the single largest genetic causes of complex diseases with inflammatory components such as MS.

    Statins, a relatively new group of drugs used to lower blood cholesterol levels, have been shown to reduce activity in this gene and thus produce anti-inflammatory effects. Statins have been tested on MS patients and have been demonstrated to be beneficial in this very way. See the item on statins on this page This discovery provides a pointer to how they may work.

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17. CANADIAN APPROVAL FOR CANNABIS DERIVED SPRAY FOR MS PAIN

    GW Pharmaceuticals today (19/04/2005) announced that Canadian approval with certain conditions had been granted for the marketing of Sativex, its spray derived from cannabis for relief of pain in MS. The spray is marketed in Canada by Bayer Healthcare and is administered under the tongue or to the inside of the cheek. It is designed for self administration. According to the statement, the most frequent side-effects encountered in clinical trials included nausea, fatigue, dizziness and application site reactions. These were claimed to be usually mild or moderate in severity and often resolved with down-titration or interruption of treatment. The approval is conditional on additional studies to verify the clinical benefit. Sativex is expected to be available through Canadian pharmacies by late Spring 2005.

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18. GOAT SERUM (AIMSPRO) TRIAL HALTED BY DAVAL

    Last month the aimspro trial at St George's Hospital was halted by Daval International. Initially the company said it was stopped because proper protocals were not being followed. It has now issued a further statement (29/03/2005) as follows:

    "The trial was halted because of concerns over St Georges Hospital's pharmacy allowing the product "Aimspro" to thaw. This was in breach of all instructions given by Daval International. All other treatment programmes are completely unaffected."

    This leaves the intriguing question as to whether any of the participants suffered ill effects in the trial. Apparently the trial in Oxford continues. This disappointing development comes in the wake of the very recent claim by the company that there had been very significant improvement in optic neuritis symptoms among those in the trial. See the earlier item on goat serum on this page

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19. TYSABRI (ANTEGREN) SHOCK WITHDRAWAL ONLY WEEKS AFTER POSITIVE RESULTS FROM TRIAL AND MONTHS AFTER AFTER FDA APPROVAL

    Biogen & Elan today announced they are withdrawing Tysabri (Antegren) from sale in the USA and ending all trials following the death of one person and the serious illness of a second. The statement was issued only two weeks after the release of very positive results from trials and three months after early approval for its use was granted by the FDA in the USA as reported in the following item on this page.

    A statement from the two companies said,
    "This decision is based on very recent reports of two serious adverse events that have occurred in patients treated with TYSABRI in combination with AVONEX® (Interferon beta-1a) in clinical trials. These events involve one fatal, confirmed case and one suspected case of progressive multifocal leukoencephalopathy (PML), a rare and frequently fatal, demyelinating disease of the central nervous system. Both patients received more than two years of TYSABRI therapy in combination with AVONEX.
    The companies' actions have been taken in consultation with U.S. Food and Drug Administration (FDA). Worldwide regulatory agencies are being kept informed.
    The companies will work with clinical investigators to evaluate TYSABRI-treated patients and will consult with leading experts to better understand the possible risk of PML. The outcome of these evaluations will be used to determine possible re-initiation of dosing in clinical trials and future commercial availability."

    The previously successful outcome of the trials had raised a hope that tysabri might be the world's most effective MS treatment. This hope has now been dashed at least for the present.

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20. TYSABRI (ANTEGREN) TRIAL CONFIRMS EARLIER POSITIVE RESULTS

    Biogen & Elan, the companies jointly conducting clinical trials of Tysabri (Antegren) (Natalizumab), today announced that their Phase III Affirm trial has confirmed the earlier reported outcome of the Phase I & Phase II trials of persons with relapsing forms of MS. They say that there was a 42% reduction in the risk of disability progression and a 67% reduction in the rate of clinical relapse over two years. The companies anticipate that two-year data from the AFFIRM trial will be presented at the American Academy of Neurology meeting in April 2005. The companies expect two-year results from the SENTINEL trial will be available mid-year. Earlier developments reported on this page at Antegren, renamed Tysabri, gets FDA approval for MS (posted:25/11/2004) and Latest on Antegren (natalizumab) Trials (posted 10/11/2004)

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21. WHAT'S THIS ABOUT GOAT SERUM?

    A number of people with MS have been receiving aimspro, a treatment that uses antibodies of serum of goats that have been treated with a number of vaccines to generate the antibodies. There is a considerable amount of anecdotal evidence of significant improvements although there are also some reports of no beneficial outcome.

    Aimspro is manufactured by Daval International, a UK based company. A controlled trial (where half of the participants are receiving the treatment and half are on placebo) involving 80 participants with secondary progressive MS currently ongoing at St George's Hospital in London is expected to report in Jume 2005. Another trial in Oxford involving participants with optic neuritis is also expected to report around the same time. A third trial involving persons with acute relapses is planned.

    Aimspro is administered through injection and appears to have very limited side effects. It was made available to 150 persons through their GP before the trials started. It is no longer available this way. Much of the anecdotal evidence of benefits came from these sources. Proper evaluation of its effect must await the outcome of the clinical trials.

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22. WHY DO MORE WOMEN THAN MEN GET MS?

    This question has long puzzled researchers and now a Mayo Clinic led team of international researchers has identified a gene difference that may help to explain it at least in part. The team studied MS populations in four countries, USA, Northern Ireland, Belgium and Italy.

    Interferon gamma belongs to a group of proteins that communicate with cells. Research by scientists at the Mayo Clinic has shown that women have higner levels of naturally produced interferon gamma than men. Experiments elsewhere showed that high levels of interferon gamma could intensify the MS damage processes and make the disease worse.

    The team found that fewer men than women in the populations studied had the gene that gives rise to higher levels of gamma interferon. The leading author of the report, Dr. Weinshenker of the Mayo Clinic said "Our finding isn't the whole genetic cause, but it's a helpful step that could lead us to a more complete understanding of MS -- and ultimately, effective treatment. It's also a very promising lead about gender differences that may pertain to susceptibility of other diseases, too, such as rheumatoid arthritis."

    The report was published on 27 January, 2005 in the online edition of the journal, Genes & Immunity. Shirley Haggerty from the Applied Genomics Group, School of Pharmacy, Queen's University of Belfast and Stanley Hawkins of the Northern Ireland Regional Molecular Genetics Laboratory, Belfast City Hospital Trust were the